From ENT to dentist

Hello all! I am new to this site and needing a little guidance. For months now I have been experiencing dizziness whether I may be sitting or standing once or twice a day, and an earache in my right ear that would come and go. I eventually developed pulsatile tinnitus in my right ear as well. I was referred to an ENT by my pcp who ordered and mri and mra which came out normal. By this time I’m having random earaches and shooting pains in, under, behind both ears. Because the mri and mra was normal I was left to deal with the ear pain, dizziness, pulsatile tinnitus and sometimes regular tinnitus as well as head pressure and headaches. My blood work has been normal except for a slightly elevated liver enzyme, sinus X-ray clear, sono of my carotid artery clear, sono of thyroid clear. I finally saw a dentist per my ent who said it could be tmj. The dentist ordered a panoramic X-ray that showed what he thought is ES. Could this be causing all my pain? It’s hard to see. Any info would be great thank you! I’m located in Texas. 2 hours from San Antonio.

Hi melb777!

We’re so glad you found us! Since we aren’t doctors here, we can’t diagnose but based on our collective experience w/ ES we can tell you what we see. In your case, your right styloid process does look quite long, curved & pointed. Though length is often the focus when it comes to ES, often a shorter styloid that’s extra thick or curved or pointy can cause just as much trouble as an elongated one. Calcified stylohyoid ligaments can play in as well, though I don’t see that problem in your panoramic x-ray, but this type of scan isn’t the best for visualizing that area. Doctors who do ES surgery generally prefer a CT scan w/o contrast of the area between the skull base & the hyoid bone (some call it a styloid protocol CT). It is good if the radiologist can give an opinion in the written CT report of styloid lengths & whether or not calcification of the s-h ligaments is visible.

Your symptoms all line up w/ those we’ve seen w/ ES. Everyone is a little different in how it effects them. You can put a symptom in the search box (click on magnifying glass above) & posts where others have discussed that symptom will come up. Reading those will be very helpful for you.

There are several members on this forum from TX but as far as I know, they’ve all ended up traveling out of state for surgery for lack of a surgeon willing to help them in TX. There are some very experienced ES surgeons on our US ES Doctors’ List - Dr. Milligan in Phoenix, AZ; Dr. Samji in San Jose, CA, Dr. Cognetti & Dr. Newman in Philadelphia, PA. I believe all of these doctors will do phone consults once they have a copy of your CT scan. These doctors are all willing to provide an opinion (by phone) w/o obligation to have them do the surgery. Health insurance will sometimes cover the cost of the phone consult.

Please let us know how we can support & encourage you going forward!

The symptoms you describe are certainly ones that people with ES have…MRIs don’t show the styloids as well as a CT or panoramic xray, that could be the reason nothing showed on your tests. The head pressure, ear pain, & pulsatile tinnitus can be down to vascular ES, but where the jugular veins are compressed rather than arteries- I had all those symptoms. A CT with contrast would show the styloids & any compression of blood vessels better.
Hope you can get some one to be referred to soon!

Thank you so much for this info! My pcp set up a ct scan with and without contrast on the temporal bone area. As well as the neck with and without contrast. Do you think these exams will tell me more?

Thank you so much for this info! My pcp set up a ct scan with and without contrast on the temporal bone area. As well as the neck with and without contrast. Do you think these exams will tell me more? I’m kind of terrified of the dye. I had a ct of the abdomen six years ago and had a few hives but I hear the reaction can be worse the second time.

Yes, the CT scan will show if you have elongated styloids &/or calcified stylohyoid ligaments. The CT w/ contrast will show if you have vascular impingement, however, sometimes that only shows up w/ your head in whatever position(s) are causing vascular symptoms i.e. pulsatile tinnitus, dizziness, etc. Before you have your scans experiment w/ head positions to see if you get worse symptoms when your head is in a particular position or positions. If so, that/those is/are the position(s) you’ll want to be in for the CT w/ contrast.

Forgot to comment on the dye. I had a CT w/ contrast several years ago & the vein in my arm where it was injected burned for a number of hours afterward. Dye isn’t great stuff. Unless your vascular symptoms are very extreme, you might do well to just have a CT w/o contrast.

I don’t know much about the dye used, there’s been a discussion about that recently, but I would definitely mention the reaction you’ve had before when you go.

I too had a reaction to the dye. Mayo said for this particular CT they did not need the dye, but in cases where you do they can give you an antihistamine before to cover your bases. I understand your concern!

Can you help me find the styloids on these? There’s more to scan but this is right and left. Also mid t2 level seems pretty far down…

Can you help me find the styloids on this? There more to the scan but this says left and right?..also mid t2 seems pretty far down…

Hi melb777 -

First off, I disagree w/ a couple of items in the written radiology report - It says you have prominent ride-sided stylohyoid calcification extending to the level of T2 which doesn’t make sense unless your hyoid bone is peculiarly located (caveat - we are each uniquely made so it’s not impossible that your hyoid bone is situated lower than normal). The stylohyoid ligament extends from the tip of the styloid process to the lesser horn of the hyoid bone. Here’s what Wikipedia says: “The stylohyoid ligament is a fibrous cord stretched between the tip of the styloid process of the temporal bone and the lesser horn of the hyoid bone. The styloid process together with the stylohyoid ligament is referred as the stylohyoid complex.” You have one on the right & one on the left. The hyoid bone is generally located at the level of C-3 which is a fair distance above T-2. Again, a quote from Wikipedia: "The hyoid bone…is a horseshoe-shaped bone situated in the anterior midline of the neck between the chin and the thyroid cartilage. At rest it lies at the level of the base of the mandible in the front and the third cervical vertebra (C3) behind."
*My note: “at rest” is when you’re not talking, swallowing, laughing, etc., as the hyoid bone moves up & down during these & other processes.

The other disagreement I have is that calcification (ossification) of the s-h ligament DOES NOT have to be bilateral to for you to be diagnosed w/ Eagle Syndrome. Many people only have unilateral styloid elongation &/or s-h ligament calcification & that’s enough of a problem to cause the symptoms you’re having. Your report is also a bit ambiguous in that it intimates you have calcification on the left side w/o saying it: “This* is asymmetrically larger on the right than on the left.”
*Does the word “This” refer to the ossification? the ligament? or what?

From the way the report is worded, it sounds to me like the left is ossified as well as it wouldn’t be visible on a CT scan for comparison w/ the right if it wasn’t. Thus, the call that you don’t have ES because you don’t have bilateral calcification doesn’t make sense.

The report says the right-sided ossification is discontinuous which means it would look like a dashed line when you look at it, as opposed to a solid line. Unfortunately, because of your body angle in the scans you posted, & it’s very hard to tell where the styloid or ligament are. I will send you a copy of my scans by PM so you can see the sort of view that makes everything more obvious. It’s possible you have a view like the one I’ll send within the CT slides you have.

I hope my reply isn’t totally confusing. If so, please let me know & I’ll try to clarify further.

Thank you Isaiah_40_31 for your reply! I agree this report is so confusing and I had the same questions about as you. Should I call the radiology department for clarification? I’m trying to get a phone consultation or first appointment with Dr. Samji just to discuss this. I am tired of wasting time with local ENTs. I’m afraid he will get scared off by this terrible report. If you could please send me a scan of yours to compare that would be greatly appreciated! Thank you!

Hi melb777,

I would ask the radiologist for clarification & let him know you feel the report is ambiguous for the reasons you think & that I stated. You can give him this definition of Eagle Syndrome: “Eagle syndrome occurs due to elongation of the styloid process and/or calcification of the stylohyoid ligament.” Which is readily available on the internet as well as in numerous peer-reviewed research articles. (Notice this definition DOES NOT say bilaterally).

Dr. Samji will most likely look at your CT scans & draw his own conclusions though he does like to see the written report as well. You’ll get through to the office faster by emailing his medical assistant, Lauren, than by calling & leaving a message. Her email address is lauren @ caminoent . com (Leave out the spaces. I had to include them so the site doesn’t block the address).

Yes I agree that this report is very weird! And the radiologist says Eagles occurs when usually both the styloid bones ‘extend to the hyoid cartilage’, which is wrong, as any elongation/ calcification can cause symptoms, it doesn’t have to extend right to the hyoid bone!
But the report does say that you have extensive calcification so that’s good! Let us know how you get on.

I called the radiology place and they only want to speak to the doctor. My doctor has not gotten back to me yet. I was wondering. I’ve had only an off and on ear ache and pulsatile tinnitus for months now with dizziness. I would say since end of last year. This past few weeks is the first time I’ve experienced pain in my neck and a sore throat a few months ago that doesn’t bother me too much now. Are those odd symptoms for ES? I guess the timeline of them?

Hi melb777,
Your symptoms are not odd for ES. The pulsatile tinnitus & dizziness are usually symptoms of vascular ES & the earache/sore throat/neck pain are more typical of nerve irritation. ES symptoms are an odd lot. Some seem to come & go while others come to stay being worse some days & barely there others. We don’t know why that is but it’s a consistent trend we’ve seen on this forum.

I’m sorry the radiology lab isn’t cooperating w/ your request & wants it to come from your doctor. I’m sure the protocols that are in place are there for our protection & because of the level of liability doctors face as they care for their patients. There is no timeline as far as symptoms go. My first symptom was neck pain then others added in as time passed. By the time I had my first surgery I had a bunch of weird symptoms both vascular & nerve related. I’m very thankful they’re gone for the most part now .

Lots of members, me included, read about the possible symptoms & realise they’ve had some for a long time! Jaw pain, earache, ear pressure etc. are quite common ones we don’t realise are connected to ES initially.

Hi so I got the measurements. What do you think of this?

It’s slightly above average on the right, other members have had spots of calcifications along the ligaments which has been noted in your report. It could be enough to cause symptoms though, & research has shown the angle of the styloid, & thickness can cause symptoms too.

Thank you for your reply Jules! :hugs: I’m not sure at this point what to do. I am definitely having symptoms. Ear pain, neck, pain, little throat pain, dizzy, etc. I wish someone could tell me, no it will not grow anymore or calcify! Or yes in time it will get worse. Or how long it will take to grow more or calcify. I’m seeking out different doctors. Deep in my heart I feel like I should take care if this now. Before it gets worse. I’ve just never broke a bone or had surgery before in my life! I can’t even swallow big pills :woman_facepalming:t2: I’m a mess and a huge baby.